The Journey of James Weston

Thursday, July 29th 2021 James pissed Mom was gone for 4 days. So the hospital called early this morning letting us know that they ran out of milk during the continuous night feed. The nurse had not calculated correctly. They ended up supplementing with formula. 🤦‍♀️ Mom was feeling better so she ended up bringing more breastmilk to the hospital. 🍼 Right now James is on March milk. As soon as she arrived James woke up and was pretty inconsolable for 3 hours. Mom vented his G-tube with a syringe and got a ton of air out. He was coughing a lot of water and foam into the trach so Mom had suctioned several times. The RN who is one of our favorite in the PICU said that she had played with him, did his PT exercises, and sat him up in his chair. This is great because during the 3 hours that he was pretty irritated that's when our Discharge Coordinator 🧾, Social Worker 📃, Speech Therapist 👶, and OT ⛹️‍♂️ showed up. Mom had to ask them to come back at another time. Music therapy 🎵 cam...

Wednesday, July 28th, 2021 9:30am Call from Nurse: He said that overnight in the early morning James had been desating into the '80s, was calm, although his work of breathing was worse with strong retractions. He said that so far today he is still desating so they bumped him up to 40 FiO2 from 35 and he is now better. They ended up doing a nasal swab check and it came back negative for RSV, covid, and a few other viral infections. Mom let him know that sometimes when he's sleeping he drifts a little bit. Obviously going to a 40 FiO2 is not good for him going home. They might try the LTV later today if he continues to look okay. Mom ended up getting an IV drip to help speed up recovery. It was a 45 minute saline based electrolyte solution called an Immunity Booster which included B12 + Vitamin D + Taurine + Trace Elements + Glutathione + Vitamin C (x2).  2:30pm Dad went to the Hospital - text update below 🏥  "James had been on LTV since 11:30am. Doing good. No poop y...

Tuesday, July 27th, 2021 Mom hasn't been able to see James since Saturday. 😭😭😭 Her covid test did come back negative which is what we thought would happen, but she is still sick with a viral cold. We don't want James getting any worse so Mom is going to take it day by day. She is going to get IV therapy tomorrow at our local wellness center to help speed up things up. The initial $60 CVS run on Sunday was a basket full of Vitamin C, Zyrtec, Flonase, Zinc, Elderberry, and a Neti pot. Couldn't tell you what has helped! That's the way we typically like to do it, adding in so many variables that we don't know what's working. 😆 10:00am Nurse called with update:  Essentially no changes. James had a better night.  Mom checked the online portal and it says he weighs 7Kg now ( 15 pounds and 6.92 ounces) . It shows today's date at 4:30am. She doesn't know why they are insistent with being Hands-On in the middle of the night as soon as she is not there. She al...

Monday, July 26th, 2021 9:30am Nurse called this morning: Clonidine suggestion is to change to Q6 and alternate with methadone so every 3 hours James gets something to decrease frequency without changing the dosage. Starting 24 hour trial today on the LTV - started at 5am (or until James needs a break). Had a small spit up on his face but nothing major. Vented to remove gas several times. Overall pretty good. Weren't able to get enough blood from the heal stick after 2 attempts so Director said it's not needed and to not try for now. If needed later, will try IV team, but will keep us posted. Lactolose scheduled for 4am and 4pm. We can FaceTime on the iPad anytime you want too. 1:00pm Nurse called with update:  James isn't doing well. They already gave him Tylenol, they are going to give him morphine now. They are switching him back to the Servo. They tried holding him, venting him. I guess nothing is working. They think he may be sick. They tried a heel stick on nigh...

Sunday, July 25th, 2021 Started LTV trial at 3am, at 6:30am the POWER LOST alarm went off again. This is very concerning considering on how Vent Alarms go off all the time on this ventilator. Dad held James in the morning and unfortunately he projectile vomited all over Dad. Luckily Dad had a 2nd shirt to change into; however, feed port then opened on his shirt and pants. Still no bowel movement since 12:30pm on Friday so with the 4:00pm bolus feed they are going to give him a second dose of lactulose. If that does not help move things for James they will give him in the evening.  Due to James's chest rising a little too much they decided to do a 10-hour trial today instead of 12 hours on the LTV for each shift. Tomorrow shooting for a full transition on the LTV. 🤒🤧😫 Mom has not been feeling well and today was even worse. She ended up going to a walk-in clinic to see if she could get tested for the flu or something. The doctor did not think she had the flu maybe just a viral col...

Saturday, July 24th, 2021 Updates: James vomited this morning twice around 8:45am and 9:20am. We have mylicon gas drops ordered now so they will be given Q6. James tolerated the LTV today for 7 hours during day shift and 7 hours during night shift. Mom was holding him in the chair and James started having a BPD episode, turned purple, and went lifeless in her arms. The Charge Nurse, Physician Assistant, and 2 RTs came in. No one knows why. His stats were good, his trach was in, and we couldn't find a disconnected tube. He was able to bring his color back. But oh man that was scary! Dad came at 4pm to relieve Mom. He read James Peter Pan. Dad also helped with the wipe down bath and trach tie change. James slept on his tummy for 6 hours.   P.S. You can email James your love and support as often as you’d like. Mom and Dad read these emails to James as they come in. We all love them! JamesWestonAbramowitz@gmail.com

Friday, July 23rd, 2021 Updates: At 12:30pm, James had a massive diaper. All over his bed, filled up 3 diapers, and a onesie. 2nd bowel movement today. Mom talked to the Doctor to see if we can change the lactulose to just once a day so we will skip the evening dosage. Mom did his wipe down bath by herself. James did 7 hours on the LTV today for both day shift and night shift. Tomorrow we are getting a new doctor that we've never had before. We've asked the nurse to start doing mylicon gas drops again. 🚨 First emergency trach out situation! We were doing Trach ties and the RT was insistant on holding up the back of his head instead of him laying on a rolled towel. Mom asked several times if he could just lay him down, because that is the way she was trained to do it and is comfortable that way (more importantly it's safer). The RT let Mom know that the swaddle not working, James was getting out of it (this happens everytime we do trach care). Well we heard James make a ful...